Background Co-morbid mental health problems in chronic diseases are associated with poorer clinical outcomes, and the detection of mental health disorders and integration into chronic disease management programmes are recommended. A reduced quality of life and mental health disorders are recognised in primary sclerosing cholangitis (PSC), however are rarely addressed by health professionals, and furthermore do not feature in PSC guidelines. We integrated mental wellbeing assessment into our clinical service for patients with sclerosing cholangitis (SC) through self-reported electronic patient questionnaires, and sought to evaluate factors associated with engagement.
Methods We performed a prospective single centre study of adult non-transplant patients with SC attending the outpatient clinic over a 1 year period. Alongside the clinic appointment reminder text message, there was a link to the e-IMPARTS website. For patients attending clinic in person a QR code was also available. Patients completed self-reported questionnaires related to quality of life, illness perception, depression and anxiety. After completion a summary report was uploaded to the electronic patient records, including recommendations for patients identified with symptoms suggestive of depression or anxiety, and with positive suicidal thoughts.
Results Questionnaires were sent to 130 patients with SC who attended clinic, and 52/130 (40%) completed the e-IMPARTS questionnaires. The subgroup who completed the questionnaire were: median age 43.2 years (IQR, 30.2–58.3); 20 (38.5%) female; 39 (75.0%) large duct PSC; 12 (23.1%) cirrhosis. On univariate analysis of baseline characteristics of patients who did and did not complete the e-IMPARTS questionnaire (table 1), there was no difference in demographics, subtype of SC, presence of cirrhosis or treatments.
The median score for overall worry in the last week was 5 (IQR, 2–7; scale 0–10). The most commonly identified issues patients worried about were: fatigue (63.5%); needing a liver transplant (44.2%); feeling worried (42.3%); and being diagnosed with cancer (40.4%). On screening tests 11 (21.1%) were suggestive of a major depressive disorder, and 5 (9.6%) an anxiety disorder.
Conclusions Through integration of an electronic questionnaire for completion prior to clinic for patients with SC we found a high prevalence of patient worries and symptoms of depression and anxiety. These results could then be used to focus the consultation. There was a reasonable uptake of completing the questionnaires in our cohort and we did not identify a subgroup of patients who did not engage. We recommend the adoption of similar tools into routine clinical practice for patients with SC.
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